IN life Lorna Paterson brought light, laughter and joy to everyone she met through her infectious enthusiasm and glowing demeanour.

Lorna died in May 2008, aged 14, following complications arising from her life-long battle with cystic fibrosis (CF).

A medical tribunal this month concluded that the consultant responsible for her treatment at Frimley Park Hospital was unfit to practise following the deaths of two CF patients under his care, including Lorna.

Dr Ronald Kelvin Knight was suspended from the medical register for 12 months on grounds of misconduct on February 14.

Now, Lorna’s parents Alison, 53, and Neil, 57, from Horsell in Woking, have vowed to ensure their daughter’s legacy is one that brings a ‘sea change’ in the NHS.

Neil said after a number of great institutions including Parliament, the media and the banking sector having suffered their own crises, it was time the NHS faced its shortcomings.

“Lorna’s last word was simply ‘help’,” said Alison. “No one should endure the amount of pain, fear and anguish Lorna felt at the end of her life.

“Mistakes did not lead to Lorna’s death, it was willful neglect that resulted in her receiving treatment that was wholly wrong.

“Dr Knight has been through the General Medical Council (GMC) tribunal process but there’s still no accountability. This is about safeguarding the future and ensuring the system – which looks after its own very closely – is not self-serving.”

Dr Knight, 67, faced 10 allegations resulting from his care of Lorna from August 1994 until her death, and Patient B, an adult, from July 2008 until their death in February 2010.

Among the panel’s key findings were he willingly treated Lorna on the assumption that as a physician for adults, he had the equivalent and necessary skills to that of a paediatric CF specialist.

He was found to have provided fundamentally inadequate care for both patients upon their final admissions and demonstrated failings borne of ‘deliberate and persistent’ breaches of standards.

His counsel, David Morris, said Dr Knight accepted the findings and would take respo-nsibility for his shortcomings.

After raising a formal complaint and pursuing a medical negligence case against Frimley Park Hospital, the Patersons were invited to give evidence during the tribunal but were left feeling ‘disillusioned’ by the paths open to them.

“No process has a remit to obtain justice,” said Neil.

“The 2010 Mid-Staffordshire Inquiry said ‘appalling and unnecessary suffering’ at the hands of the medical profession should be punished.

“We felt the panel became weaker throughout the tribunal and the sanction was insufficient – are we not all equals in law?

“Your relationship with a doctor is a close – Lorna liked and trusted Dr Knight. But the system wasn’t able to help when the wheels came off.”

He added Lorna’s legacy should be about ensuring the needs of NHS patients and their families are served at all times, and not those of its practitioners.

In its determination, the GMC panel stressed the Paterson’s trust in Dr Knight was ‘wholly, completely and fundamentally’ misplaced.

Reflecting on their own role in Lorna’s care, Alison agreed their trust went too far.

“It was like Stockholm Syndrome,” said Neil. “He cared for Lorna almost from birth and for the first 10 years, we were very happy.

“But when things became more serious we tried to stay optimistic for Lorna’s sake.

“When she was discharged on April 28 2008 – just over a week before she died – she spent a fitful time at home and, by the end, it was too late."

According to the Cystic Fibrosis Foundation, around 9,000 people in the UK have the disease which affects the lungs and digestive system by clogging them up with thick sticky mucus, making it hard to breathe and digest food.

Paying tribute to her daughter, Alison said Lorna was always of the view her CF was part of her character.

“She never willingly let it affect her. By the age of 14 she had achieved so much. She loved playing music and performing. On just 30% lung capacity she performed Mozart’s Queen of the Night aria at Horsell Village Hall, just a few weeks before she died – she had been practising for two years. She never gave up.”